So I've been delaying putting this out to all, really for no reason than a touch of weariness about having to repeat this story every couple of years, but I am back in treatment.
Though we celebrated a benign result after liver surgery in December, after continued close monitoring, in May we found 3 lymph nodes in the left axilla. I am frankly pissed that I should have cancer in a part of the body I have never heard of, but now know this is the underarm area, where it meets the chest. Extensive tests- brain MRI, PET, bone scans - show no evidence of disease elsewhere, but as it is in the lymph system, we know it can travel. Systemic treatment is the first course of action. Hit what we can see, and what we can't. So, port went back in and I started chemo end of May.
Tomorrow begins round 5, 3 days every other week. I have steeled myself for 12 rounds, through early November, but scans mid August will help us evaluate if this is having the desired effect. If yes, we continue. If no, we try a different cocktail. And in the midst of that, we are going to MD Anderson in Houston for a surgery consult as my team here feels this would be a specialized surgery, one that requires experience with and careful consideration of how to best minimize side effects that might otherwise get in the way of my very active, physical lifestyle. I am grateful that my medical team considers who I am as we chart a course, and that they never let egos get in the way.
It was harder this time mentally, as we had to come to terms with this being a chronic disease. Although I am not in imminent danger today, and there are many options still and more coming every year, this is stage 4 cancer, and I will have to chase this through my body - this will not be the last time. But I am prepared to beat back this brush fire, and the next, and the next after that. It is not the size of the dog in the fight, but the size of the fight in the dog!
We are good! Although the couple of 'on' days I am exhausted, I tolerate this well and recover quickly. The rest of the time I am me, we are us, continuing to do all the things that make me happy and keep me sane. Still working full time too, though that doesn't necessary land in the 'keeping me sane' category. And as always, we have tremendous support from family, friends and colleagues, with more offers for help than I can count. I am humbled at how that support system mobilizes over and over again, how you all seem to be stronger, increasingly creative in your generosity, and more full of love each time. Sleepover for Van? Family needs to eat? Want to plan an Alaskan adventure? T-shirts made with your new motto printed on them? A little music to soothe the soul? Someone has it covered.
So, what do we need now? I take good juju in all forms. If you pray, thank you. If you rub the belly of your laughing Buddha for luck, I'll take it. If you worship at the alter of wine and ice cream, yes please - I like chocolate and a bold syrah!
Once more unto the breach, my friends. Thank you for being by my side.
Sunday, July 24, 2016
Monday, May 2, 2011
Time Heals
It is hard to believe that it's been six months since my first clean scan. But when I consider the emotional and physical healing that has occurred, it seems like it should be longer.
The first three months were cake. Not realizing how tired I had been throughout treatment, I was full of energy. I started running and skiing, driven by a desire to be active and regain some level of fitness and strength. We hosted Thanksgiving, celebrated Van's first Christmas at home and ushered in 2011 with friends and music, drinking in all the promise of a new year.
In January, I had my first round of follow up blood tests. This was difficult mentally. I realized that these tests don't definitively say I do or do not have cancer. My doctor reads various counts and levels, synthesizes the data, asks if I feel OK, and then says everything looks good. I found it hard to accept what was on the surface without looking for the iceberg underneath. The tumor marker, a test for the CEA protein, went up a bit. Still in the normal range, but is the fact that it went up normal? What would make it go up? How much of a change is normal? When do we question it and do something more?
Shortly after, I started having some abdominal cramping. The old-me said ignore it, as it was more of an annoyance than pain. The new-me knows that ignoring symptoms can get you into trouble. Still, I was questioning myself, questioning if it was really something or nothing. For several days I was silently panicking, and then after a not-so silent freak out with my favorite surgeon, I went in for a follow up exam. Afterwards, he said that it didn't look good, it looked fucking perfect. He actually said 'fucking', with a smile. Aside from being pleased to assuage my concerns, he seemed pretty proud of his handiwork.
The cramping eventually turned out to be the usual monthly thing, which was a big surprise as the radiation a year before was expected and thought to have brought on early menopause. It was a well-timed reminder that the body is an amazing thing, capable of more than even our doctors know, and that with time comes healing. I also learned in those few weeks that there's a very big difference in living with cancer and living through cancer. During treatment, I could point to specific things I was doing - proactive and reactive, physically and mentally - to pursue a cure and conquer cancer. On the other side of remission however, there's just monitoring, and that is just so, well...passive. Like too much caffeine, passivity makes me anxious and fidgety, and I have had to learn to manage that.
I've landed on it feeling a bit like being in a row boat. You're exposed to the elements, and sometimes a wave or gust can toss you around and push you off course. But you find your balance, take hold of the oars and course correct your direction when needed. And as you keep rowing, you need to remember to tilt your face to the sun and enjoy the view.
Mid April I had a 6-month PET scan, colonoscopy and series of blood tests. I would like to think that my new approach made this round of tests much easier to deal with mentally, and it did - but the clean results didn't hurt either.
The first three months were cake. Not realizing how tired I had been throughout treatment, I was full of energy. I started running and skiing, driven by a desire to be active and regain some level of fitness and strength. We hosted Thanksgiving, celebrated Van's first Christmas at home and ushered in 2011 with friends and music, drinking in all the promise of a new year.
In January, I had my first round of follow up blood tests. This was difficult mentally. I realized that these tests don't definitively say I do or do not have cancer. My doctor reads various counts and levels, synthesizes the data, asks if I feel OK, and then says everything looks good. I found it hard to accept what was on the surface without looking for the iceberg underneath. The tumor marker, a test for the CEA protein, went up a bit. Still in the normal range, but is the fact that it went up normal? What would make it go up? How much of a change is normal? When do we question it and do something more?
Shortly after, I started having some abdominal cramping. The old-me said ignore it, as it was more of an annoyance than pain. The new-me knows that ignoring symptoms can get you into trouble. Still, I was questioning myself, questioning if it was really something or nothing. For several days I was silently panicking, and then after a not-so silent freak out with my favorite surgeon, I went in for a follow up exam. Afterwards, he said that it didn't look good, it looked fucking perfect. He actually said 'fucking', with a smile. Aside from being pleased to assuage my concerns, he seemed pretty proud of his handiwork.
The cramping eventually turned out to be the usual monthly thing, which was a big surprise as the radiation a year before was expected and thought to have brought on early menopause. It was a well-timed reminder that the body is an amazing thing, capable of more than even our doctors know, and that with time comes healing. I also learned in those few weeks that there's a very big difference in living with cancer and living through cancer. During treatment, I could point to specific things I was doing - proactive and reactive, physically and mentally - to pursue a cure and conquer cancer. On the other side of remission however, there's just monitoring, and that is just so, well...passive. Like too much caffeine, passivity makes me anxious and fidgety, and I have had to learn to manage that.
I've landed on it feeling a bit like being in a row boat. You're exposed to the elements, and sometimes a wave or gust can toss you around and push you off course. But you find your balance, take hold of the oars and course correct your direction when needed. And as you keep rowing, you need to remember to tilt your face to the sun and enjoy the view.
Mid April I had a 6-month PET scan, colonoscopy and series of blood tests. I would like to think that my new approach made this round of tests much easier to deal with mentally, and it did - but the clean results didn't hurt either.
Friday, October 15, 2010
Kiss My Ass
Tuesday morning was the big PET scan. It was raining, chilly and grey. I took advantage of the valet when I arrived at the hospital, a patient perk I tried to strictly avoid throughout treatment as it seemed like that would be giving in to cancer. When I checked in at registration I was escorted back out into the rain, to the mobile scan unit I had passed in the parking lot on my way in.
Shelly, the tech, sat me down in a tiny little room at one end of the trailer, verified that I had properly fasted, tested my glucose level, asked me twice if I might be pregnant and than inserted an IV of FDG, a radioactive glucose that would be taken in by any cancer cells. Then she left, closing the reinforced door behind her so that she and her lab partner would experience less exposure themselves. No magazines, no TV, work email slow, I was left alone with nothing but my own thoughts. I tried to focus on the muzak, make lists of things I had to do before surgery, pre-draft a blog entry in my head, anything to avoid thinking about the possibility that this test might not yield the results I needed it to. After 45 minutes, enough time to allow the glucose to spread throughout my body, I spent 20 minutes on the table for the scans. When I left they gave me a goody bag of crackers and chocolate. Someone asked me if it felt very surreal, but this entire journey has been surreal.
Waiting for two days wasn't as bad as I thought it would be. Once outside that tiny room and absorbed in the day to day of life again, I was right back to believing all would be right. Except for that last hour before the appointment, sitting in my office sweating it out. What if he doesn't have results? What if there's a spot on my liver? What if? But all is right. Dr. Fisher didn't make me wait at all - before he was even over the threshold of the examination room yesterday he blurted out the PET scan was normal. No detectable cancer, complete remission. So there Steve and I are - crying, hugging, kissing, breathing - and then pulling ourselves together to talk through the rest of our questions, to understand what the next five years holds.
Regardless of what I have to look forward to in terms of surgery, scans and blood tests, despite the 30% chance of recurrence, ignoring the anxiety I know I'll feel periodically the next few years as I constantly question every twinge and ache...today I'm cancer free, today we celebrate.
Shelly, the tech, sat me down in a tiny little room at one end of the trailer, verified that I had properly fasted, tested my glucose level, asked me twice if I might be pregnant and than inserted an IV of FDG, a radioactive glucose that would be taken in by any cancer cells. Then she left, closing the reinforced door behind her so that she and her lab partner would experience less exposure themselves. No magazines, no TV, work email slow, I was left alone with nothing but my own thoughts. I tried to focus on the muzak, make lists of things I had to do before surgery, pre-draft a blog entry in my head, anything to avoid thinking about the possibility that this test might not yield the results I needed it to. After 45 minutes, enough time to allow the glucose to spread throughout my body, I spent 20 minutes on the table for the scans. When I left they gave me a goody bag of crackers and chocolate. Someone asked me if it felt very surreal, but this entire journey has been surreal.
Waiting for two days wasn't as bad as I thought it would be. Once outside that tiny room and absorbed in the day to day of life again, I was right back to believing all would be right. Except for that last hour before the appointment, sitting in my office sweating it out. What if he doesn't have results? What if there's a spot on my liver? What if? But all is right. Dr. Fisher didn't make me wait at all - before he was even over the threshold of the examination room yesterday he blurted out the PET scan was normal. No detectable cancer, complete remission. So there Steve and I are - crying, hugging, kissing, breathing - and then pulling ourselves together to talk through the rest of our questions, to understand what the next five years holds.
Regardless of what I have to look forward to in terms of surgery, scans and blood tests, despite the 30% chance of recurrence, ignoring the anxiety I know I'll feel periodically the next few years as I constantly question every twinge and ache...today I'm cancer free, today we celebrate.
Monday, October 4, 2010
Chew On It
Today is the first Monday that I didn't have to go in for treatment. Oh, what a relief it is...
Side effects had started to really linger, initially lasting two or three days but then running out to 10 or more. So essentially, I would start to feel better by say Friday, and Monday I would start all over. That meant a lot of weekends I was quietly bracing myself, relaxing, napping, trying to conserve energy for the rollercoaster on Monday.
Not this weekend, though. This weekend I cooked, and it was more than scrambled eggs and toast. I took Donovan to the Fall festival at the Historic Park - hay rides, caramel apples, honey sticks, cowboys and indians. We went to the playground and out for happy hour. We drove around in the parking garage at the mall for 15 minutes after grocery shopping because Donovan thinks it is a tunnel. I went running. Twice. It wasn't great, but I managed to piece together a few miles each day. I ran to Bon Jovi, which reminds me of being young and carefree, when my biggest worry was getting my hair big enough. My thighs hurt today, and it feels good. It was a meaty weekend.
Throughout the last week, I've read or heard some inspiring notes that hit home. Messages I'll call up when I'm being rolled into that big scanner Thursday, or when my chest aches and I'm out of breath, thinking about slowing to a walk before that next light pole. I thought they were worth passing along.
Side effects had started to really linger, initially lasting two or three days but then running out to 10 or more. So essentially, I would start to feel better by say Friday, and Monday I would start all over. That meant a lot of weekends I was quietly bracing myself, relaxing, napping, trying to conserve energy for the rollercoaster on Monday.
Not this weekend, though. This weekend I cooked, and it was more than scrambled eggs and toast. I took Donovan to the Fall festival at the Historic Park - hay rides, caramel apples, honey sticks, cowboys and indians. We went to the playground and out for happy hour. We drove around in the parking garage at the mall for 15 minutes after grocery shopping because Donovan thinks it is a tunnel. I went running. Twice. It wasn't great, but I managed to piece together a few miles each day. I ran to Bon Jovi, which reminds me of being young and carefree, when my biggest worry was getting my hair big enough. My thighs hurt today, and it feels good. It was a meaty weekend.
Throughout the last week, I've read or heard some inspiring notes that hit home. Messages I'll call up when I'm being rolled into that big scanner Thursday, or when my chest aches and I'm out of breath, thinking about slowing to a walk before that next light pole. I thought they were worth passing along.
- 'If we don't have some perils, fears, ups and downs, don't take some risks, don't have some set-backs, how do we recognize just how much we have?' ~ Roxann Johnson
- 'Life is good and we should live passionately!' ~ Tasha Fontanes
- 'Serenity is not freedom from the storm, but peace amid the storm. Being happy doesn't mean everything is perfect. It means you 've decided to look beyond the imperfections.' ~ James Covino
- 'Back to full strength 100 yards at a time...' ~ Kevin Cuddie
- 'That was a fun hay hay, we should do it again tomorrow, Mommy.' ~ Donovan
Thursday, September 30, 2010
Next Steps
Though I'm still basking in having finished four months of chemo, there's still much to be done. Here's an outline of next steps;
- 10/5 - Consult with the surgeon in preparation for the ileostomy reversal, commonly called the 'takedown'.
- 10/7 - Testing of anastomosis. This basically verifies that I don't have any colon blockages or leaks as a result of the first surgery, which would impede the takedown. Once again, I'll be bare-assed on a table with a bunch of strangers. This from the chick who changes in a bathroom stall in the gym locker room and never peed in front of even her best girlfriends.
- 10/12 - PET/CT scan. Technically, they'll give me an IV of a tracer, a slightly radioactive glucose, wait an hour and then scan me. Any area of the body with abnormally high metabolic activity (cancer) would have a higher glucose intake, so the tracer will be highly attracted to those areas and would show up on that scan. But I know this house is clean!
- 10/14 - Review results of the scan with my oncologist.
- 10/14 (Evening) - Substantial intake of really good champagne.
- 10/25 - Takedown surgery, which will keep me in the hospital about three days and home on leave about four weeks. Even after less than six months with the ostomy, this will be a slow recovery as my colon remembers how it is supposed to work...I'm told it will likely be a year before I really feel 'normal'. Still, Mommy's 'boo-boo' will be no more.
- TBD - Port removal.
- February, 2011 to October, 2015 - For the first three years, I've have an annual CT scan, with blood work every three months. Years four and five I'll have blood work every six months, with an annual scan. And for the rest of my life I can look forward to colonoscopies every two years...
Despite the fact that there's some really rough stuff in the plan, I'm OK with it all. Everything up to this point was about killing the cancer inside me - everything from this point forward is intended to make me whole, help me recover and move on, and get back to just being me.
Monday, September 27, 2010
Finito!
I've been remiss in updating here, as Kane reminds me with relative frequency, and I do feel guilty about that. But, the time has not been wasted, rather filled with sweet events, so I can't be hard on myself. I could swear I posted something about lucky treatment number 7, which I did construct in my head, but apparently never put it to keyboard...
Treatments five and six were rough. My kick-over-the-speakers attitude was beginning to wan a bit. Sandwiched between six and seven however, Stephen and Katie came to visit. Getting to know Katie, who I gather is going to be around awhile, and seeing my brother in love, was a great distraction. The seventh treatment the following week was easier than five and six, I think because there was finally an end in sight. And with Mom in town that following weekend, recovery was easier on us all - there was a third person in the rotation for hide-and-seek, tricycle training and bath-time!
After that following week off treatment, we had a three day weekend in Napa for Jen and Mike's wedding. A day of touring wineries with friends via limo, a day off with Steve touring by bicycle, some really fabulous food, a candlelit wedding under the stars, lots of laughs and moments with great friends, the comfort of knowing Donovan was home with Yenny riding the train and eating ice cream each evening...I came back on a high and that carried right into the eighth and final post surgical treatment, which started our first day back.
Although it has been the hardest physically, it was the easiest mentally. Throughout those three days last week, no matter the nausea and that chemical taste, no matter how bad the burning in my hands and mouth, no matter a few more eyelashes - I truly believe I will never have to do this again and that made it easier to power through. And then there I was, after three and a half months of treatment, being unplugged Wednesday afternoon...rounds of hugs from all the nurses, cheers from the receptionists on my way out the door, a flood of relief and tears in the car home. It was actually hard to put into words how good it felt to be done. And then, on Thursday evening, my niece, Kasey Gabrielle Metz was born and Keith was quickly able to put it into words...she and I now share the first day of the rest of our lives.
Treatments five and six were rough. My kick-over-the-speakers attitude was beginning to wan a bit. Sandwiched between six and seven however, Stephen and Katie came to visit. Getting to know Katie, who I gather is going to be around awhile, and seeing my brother in love, was a great distraction. The seventh treatment the following week was easier than five and six, I think because there was finally an end in sight. And with Mom in town that following weekend, recovery was easier on us all - there was a third person in the rotation for hide-and-seek, tricycle training and bath-time!
After that following week off treatment, we had a three day weekend in Napa for Jen and Mike's wedding. A day of touring wineries with friends via limo, a day off with Steve touring by bicycle, some really fabulous food, a candlelit wedding under the stars, lots of laughs and moments with great friends, the comfort of knowing Donovan was home with Yenny riding the train and eating ice cream each evening...I came back on a high and that carried right into the eighth and final post surgical treatment, which started our first day back.
Although it has been the hardest physically, it was the easiest mentally. Throughout those three days last week, no matter the nausea and that chemical taste, no matter how bad the burning in my hands and mouth, no matter a few more eyelashes - I truly believe I will never have to do this again and that made it easier to power through. And then there I was, after three and a half months of treatment, being unplugged Wednesday afternoon...rounds of hugs from all the nurses, cheers from the receptionists on my way out the door, a flood of relief and tears in the car home. It was actually hard to put into words how good it felt to be done. And then, on Thursday evening, my niece, Kasey Gabrielle Metz was born and Keith was quickly able to put it into words...she and I now share the first day of the rest of our lives.
Wednesday, August 25, 2010
We're Going Bananas
Monday was the start of treatment number six, though it almost didn't happen. I've hit that point where my counts have kind of bottomed out, particularly my white blood cells, platelets and potassium. Platelets and white blood cells I get. Not being able to fight off infection is an obvious danger and something I think about each day as I see the list of confirmed illness on the board at Van's school...pink eye, croup, fifth's disease.
But potassium? Is that really critical, I asked? Silly me...your muscles need potassium to contract, your heart to regulate blood pressure and the rest of your body to maintain cellular processes. Low potassium, or Hypokalemia (check out the big brain on Brad...), makes you weak. I'm sure this is contributing to my staggering out of bed each morning completely zapped of energy after a solid 10 hours of ambien induced sleep, as if I've slept all night with a lump of kryptonite under my pillow.
So, after I promised to stock up on potassium rich foods and shun all sick people, the doc agreed to treatment. Van and I are now locked in competition to see who can eat the most bananas and canteloupe, although he still gets the highly valued 'sticker banana'. After he proudly peals that sticker off and hands it to me I wait until he isn't looking and then stick it back on another banana in the bunch, so we never run out.
But potassium? Is that really critical, I asked? Silly me...your muscles need potassium to contract, your heart to regulate blood pressure and the rest of your body to maintain cellular processes. Low potassium, or Hypokalemia (check out the big brain on Brad...), makes you weak. I'm sure this is contributing to my staggering out of bed each morning completely zapped of energy after a solid 10 hours of ambien induced sleep, as if I've slept all night with a lump of kryptonite under my pillow.
So, after I promised to stock up on potassium rich foods and shun all sick people, the doc agreed to treatment. Van and I are now locked in competition to see who can eat the most bananas and canteloupe, although he still gets the highly valued 'sticker banana'. After he proudly peals that sticker off and hands it to me I wait until he isn't looking and then stick it back on another banana in the bunch, so we never run out.
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